A Disease A Day has a comments system which allows you to express your opinions about the conditions and tips you read here. Sometimes, though, with this website being a medical one, people use the comments to contact other people who experience the same condition.
Such is the case with Moira McLean. Her daughter Alyssa suffers from congenital insensitivity to pain. You can read her story in her blog: Understand Alyssa – Life Through Her Eyes. With this condition being so rare, we thought we’d give Moira a helping hand and show her comment here.
Here’s what Moira wrote:
Looking for all others who have experience with pain insensitivity – whichever one of the pain syndromes you have. Please contact me via Facebook … use pain insensitivity in the personal message so I know to add you as a friend. Alternatively, go to www.understandingalyssa.blogspot.com and you can contact me via the blog.
Thanks
Moira’s Facebook page can be found here.
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June 22nd, 2009 at 12:27 am
Thank you so much for doing this for me! I just found it via the google search engine … and therefore found my blog advertised too! I am extremely grateful!
Moira x x x
June 22nd, 2009 at 3:28 am
No Problem, and good luck!
July 5th, 2009 at 8:50 am
Very useful information on Congenital Insensitivity, indeed. I pity those people, who suffer from this disease. What are the remedies for this? Please let me know. Thank you.
July 5th, 2009 at 3:50 pm
CIPA or congenital insensitivity to pain is one of the rarest diseases in the world. A very rare condition and it is also known as congenital analgia. People diagnosed with this condition have their pain sensors turned off and they can’t feel any pain. The condition is extremely dangerous as these people are prone to danger not knowing the level of pain inflicted.
What caused the disorder? It is an unknown condition when the brain that recognizes the pain does not connect to the nerves that sense the pain. This unknown condition only happens to the pain sensors. People with CIPA have their other sensory areas completely checked and normal. Incredibly a rare disease, 35 people in the United States is diagnosed with CIPA. Sadly, people with CIPA has low survival rate and many doesn’t live that long to the age of 25 making the case a difficult case to study.
Pains are relatively a unique sense. It keeps us out of trouble, our body defense against harmful actions and not being able to feel pain is totally dangerous. Children especially will need to know how to sense this pain. We need to know what we should or shouldn’t do when we feel pain and we also know how not to cause pain to ourselves. Pain can help you to avoid danger and what causing this danger.
Anhidrosis, a condition of the body’s inability to sweat is found in people with CIPA. This condition can worsen the issue. With Anhidrosis, people with CIPA are not able to feel extreme temperature. Together with this and the body’s inability to sweat only means that their body is unable to regulate its temperature.
Proper attention should be made to the children with CIPA. They need to be watched more often than the normal children and may need regular checks to the doctor to see whether they are not suffering from anything that they may not be aware of. To make sure that nothing is bleeding or there’s an open cut, they should be constantly checked since they are unable to differentiate this pain from other feelings.
In a case involving CIPA, a little girl who was three years old burnt her skin from a hot oven. The little girl put her hand on the hot oven and smiling with her blood all over the kitchen. The parents who found her were shocked. It is also known that when this little girl began teething, she shredded her own lips too.
Another case in China showed a perfectly healthy 10 year old boy with a body temperature of 43 degrees. In another case in Iraq, a boy who is awake for more than 2 years without sleeping. There are many of other cases of children with CIPA condition.
Congenital insensitivity to pain is very serious. Few people with CIPA do not live to see age 25 because these people can’t feel pain. They may catch simple illness and unknowingly catching few other simple illnesses along the way but was unable to get proper treatments since they can’t feel this pain. Their body too was unable to tell them and that’s why CIPA is the rarest disease in the world with no cure yet.
April 17th, 2010 at 8:41 am
How amazing! I love seeing people out there who take the time to do something like this. Very nice of you! So many people just see these things and then move on. I will be updating my status on all my social networking sites with a link to her blog as well so we can hopefully get her some help